PWS News from Australia - December 2016
contributed by Georgina Loughnan
(This is a success story on a large scale - being able to coordinate such a huge country and organise a fundamental change for those with PWS is nothing short of fantastic, and all done by those with a passion to make change a reality! Well done our Aussie friends!)
Australia has a population of just over 24 million people spread out over an area of 7.7 million square kilometres (4.8 million sq miles). Based on the conservative PWS statistics of 1:20,000 live births there could be 1208 people with PWS in Australia. We are greater in area than people and are geographically divided into 8 regions (states and territories). Australia has had a national PWS association and 3 state associations, but recently met to work towards the amalgamation of all state bodies into the one national association. Together we hope to speak with one stronger united voice, while maintaining regional branches to manage networking and local events!
We have only 4 paediatric and 3 adult PWS publicly funded medical clinics throughout Australia, to provide a service for our people with PWS. Over the past 25 years individuals with a passion to improve the care of people with PWS, have come to the fore and developed training programmes for families, educators, employers and caregivers of people with PWS.
About 6 years ago Anne Sakaris, a mother of an adult son with PWS, developed a personalised training programme for small groups of support staff, in the state of Tasmania (population of 520,000) where there is no paediatric or adult clinic. She has also encouraged a local Specialist Physician specialising in Internal Medicine, Robyn Wallace, in establishing a Specialist Healthcare for Adults with Intellectual Disability, to provide a holistic service for adults with PWS. Anne’s work has greatly improved the awareness and care of people with PWS in Tasmania.
Victoria, another state of Australia (population 5.9 million), has a highly active PWS community. For the past 5 years Kate De Josselin, a mother of an adult son with PWS, who has a background in education, training and policy writing, has been the Training Coordinator for PWS Victoria. She has developed 7 training workshop modules, edited the Australian (PWS) Medical Alert Booklet (taken from the PWSA USA original booklet) and (PWS) Wallet Alert Card. Her training extends to schools, residential and day programme caregivers, government agencies, medical and allied health staff and advocacy groups, in the form of onsite or video conferencing, throughout Victoria.
In September 2013 The Prader-Willi Syndrome Better Living Foundation (PWSBLF), a not-for-profit organization, was established. Their vision is to enable young people and adults living with Prader-Willi syndrome to lead quality and rich lives through supported accommodation, maximised independence and meaningful community engagement. With a commitment to best practice, research, innovation, local and global expert collaborations, the PWSBLF is best positioned to address the existing inadequacies related to housing for adults with PWS. The PWSBLF and the Prader-Willi Syndrome Association of Victoria Inc are partnering to provide support and solutions to PWS families in accessing housing and support. PWSBLF and PWS Australia (PWSA) recently commissioned Melbourne University to survey the Australian PWS population, analyzing their current needs to determine how these needs will be best serviced by the new Australian National Disability Insurance Scheme (NDIS).
In January 2016 PWSA secured a Capacity Building Grant from NDIS to develop the website (pws.org.au) and resource materials for all people involved in the lives of those with PWS.
PWSA has recently teamed up with Fragile X, 15Q Duplication Syndrome and Angelman Syndrome in research conducted by Murdoch Children’s Research Institute (Melbourne, Victoria) to develop a newborn bloodspot test for diagnostic purposes. Hopefully, this will lead to earlier and cheaper diagnosis plus improved targeted interventions.
A Memorandum of Understanding has been finalised between PWSA and the Foundation for Prader-Willi Research (FPWR) in the USA to enable Australian families to join the FPWR World PWS Registry.
Kathlene Jones, the mother of a young child with PWS living in Victoria, has worked tirelessly over the past 18 months to establish Australia’s own research foundation – Prader-Willi Research Foundation of Australia (PWRFA). She has brought together national and international PWS experts to source best-fit practices for Australian research. Negotiation has commenced with PWSA to establish a Memorandum of Understanding outlining responsibilities and collaborative opportunities.
A Health Care forum, coordinated by Kathlene, was held on November 28th in Sydney, New South Wales (NSW) to initiate a review of current Australian PWS services with the view of addressing the needs of all people with PWS and reducing the existing gaps in PWS care and services throughout Australia.
NSW (population 7,638,200) PWS care is currently provided by 2 paediatric and one adolescent/adult PWS clinic. PWS training is provided for families, schools, employers, service providers and professionals throughout NSW, by the coordinator of the Royal Prince Alfred Hospital PWS Clinic, Georgina Loughnan.
PWSA has recently been supported by Interaction, a well-established PWS service provider in NSW, in bringing Dr Janice Forster to Australia for a highly successful lecture tour. This was in conjunction with her Down Under tour of New Zealand and Australia. Interaction is now working on a caregiver training programme to be conducted by Norbert Hoedebeck-Stuntebeck and Hubert Soyer from PPCB in 2017.
The PWS community in Australia is going through a period of increased awareness and boosted morale due to much change occurring within the disability support sector. The enthusiasm and involvement of parents (of both children and adults with PWS), caregivers and professionals is growing. This has been fuelled by good leadership of the PWSA (namely, James O’Brien), active members of PWSA and state associations and the encouragement that resulted from the IPWSO Conference held in Toronto this year.